"three times i pleaded with the Lord to take it away from me. but he said to me "My grace is sufficient for you, for my power is made perfect in weakness." Therefore i will boast all the more gladly about my weaknesses, so that Christ's power may rest on me. that is why, for Christ's sake, i delight in weaknesses, in insults, in hardships, in persecutions, in difficulties. for when i am weak, then i am strong." -2 corinthians 12 8-10
this was the "verse of the day" on my google home page yesterday. never has a "verse of the day" hit so close to home as this one. the surgery yesterday was actually pretty successful but the condition of his right eye was much worse than we expected which complicated an already complicated situation. let me start by saying that dr trese is the only person that could have saved his eye, let alone fix all that was wrong and we are SO thankful to be here. now, i will attempt to explain what happened in the surgery.....dr trese was able to remove about 80% of the "debris" which was actually a massive tumor like piece of scar tissue left over from the infection. the scar tissue filled about half of cole's eye ball so it was huge and impossible to see through. this scar tissue also caused a problem that we knew nothing about before yesterday.... we had been noticing that cole's right eye was shrinking and seemed to be moving back into his head. when the dr got in there his eye only had a pressure of about 1 or 2 and had started to cave in..kind of like a deflated balloon. the dr said that his eye could not have survived much longer as it was; so we are fortunate that we got him here when we did. apparently the scar tissue had damaged the ciliary bodies in cole's eye. the ciliary bodies are what produces the fluid which keeps the eye inflated. cole has always had problems with the pressure being too high [glaucoma], but since the infection the pressure in his right eye has been very low. this never made sense to us because he no longer has a functioning bleb to keep the pressures down, so why was it so low? the dr's in kc said it was likely because of the inflammation which is sometimes true but didn't explain why it remained low after the inflammation had cleared. we learned yesterday that it was actually the scar tissue that was causing the pressure to be so low. dr trese described it this way "imagine the ciliary bodies are blades of grass, cole's blades of grass are incased in concrete and i had to try and remove the concrete without damaging the blades of grass."
dr trese was able to remove the scar tissue for the most part and was able to free up the ciliary in a three different spots. we are hopeful that the ciliary bodies will be able to function on their own, but we do not know if they will or not yet. there was some retinal damage where the retina had pulled away from its proper place because it was attached to the scar tissue...to fix this dr trese freed the retina from the scar tissue and put a heavy liquid into cole's eye to hold the retina in place. the liquid also gives his eye the fluid needed to regain it's shape, but the liquid will go away in about a week and if cole's eye does not produce fluid on its own to replace it we will be in trouble, so please pray that his ciliary bodies will work again because there is nothing more they can do to make them work at this point.
so what does all this mean? first of all, cole has to be able to produce fluid and maintain the pressure in his eye....IF this happens then we are still left with figuring out how well his retina functions and how much visual field cole has now with the scar tissue out of the way. his eye needs time to heal so it will take two or three months before we will know everything. also dr trese had to remove most of the iris in cole's right eye so that he could successfully get the scar tissue out which has its own challenging side effects.
as you can tell we are overwhelmed and upset and frustrated and confused all at the same time. we do not know the final outcome but we do know that apart from a miracle from God, we need to lower our expectations. we know we need to move forward with the sight cole currently has. we will go ahead and get cole the help he needs at school and begin to teach him [and us] about how to live with low vision. he is legally blind but still functions pretty well: he can still read as long as the words are magnified and he gets around fine indoors as long as we keep the lights low. however outdoors he functions as though he were totally blind because his extreme light sensitivity makes him keep both eyes closed. he will need orientation and mobility training at least for outside. cole may still regain some sight in his right eye which would be awesome but we know now that apart from God's divine intervention, cole won't ever go back to seeing as well as he did before the infection.
our hearts are broken and heavy as we now have to come to terms with the reality of cole's vision loss and the affect it is going to have on every facet of his life. it feels as though i am mourning the loss of cole's vision..i have not let myself do that fully because i was holding onto hope that things would get better. i am happy that i can now begin to move forward again, i can move forward with what eyesight cole has left and focus on making the most of it. i now feel free to grieve and mourn the sight that has been lost. i can cry and scream and get mad over this and then i can move on. i feel relief in that.
i know this is long and confusing and my thoughts and feelings are certainly rough and unedited but we know that you all have been praying and so we wanted you to know where things stand as best we know them. i will keep you updated on our journey, thank you for walking with us thus far. we love you all.
